Is this possible?

[jessica_]

Five years ago I started having headaches. I was also on and off experiencing numbness & tingling sensations, dizziness, and the occasional losing control of my legs (I would be walking and all of a sudden fall). One night the whole right side of my body was T&N. I went to my doctor who said that it was signs of a stroke. I was sent for my first of what I thought would be my only MRI. Boy was I wrong. Anyway, my MRI showed 8 lesions and a cyst. My doctor was concerned about a "demyelinating process" and the pattern of my lesions was consistant with that of seen with MS.

I was referred to a neurologist, I soon went for another MRI of the brain and each part of the spine. As well as bloodwork, EEG, EKG, and I had to see a cardiologist. Everything came back fine except for my MRI and there was concern because of the other symptoms I was experiencing. I had to go for a Spinal Tap, which ruled out MS or I thought.

I switched neurologists when mine started putting me on and taking me off medications like they were candy. I think I was on and off of 5 different medications in a two month period. A total of 10-15 medications tried between both neurologists.

Anyway, the same tests were repeated with my new neurologist. The same things were found. He basically told me that at the moment I do not have MS but what I have could progress into MS; since a lot of symptoms are there but my Spinal Tap was negative. He said that sometime even though Spinal Taps come out negative for MS, there's still a chance that you can have MS.

Is that possible? Has anyone ever heard of that before?

[Thinkimjob]

What an awful time you're having. I hope it gets sorted out.
All the best.

[FL_Jhawk]

A spinal tap does not rule out MS. My spinal tap was clean but I still have MS. The doc said it eventually might start showing up in my spinal fluid, but I had some false period of hope thinking that because the SP was fine that I did not, therefore, have MS.

[Redwings]

He said that sometime even though Spinal Taps come out negative for MS, there's still a chance that you can have MS. Is that possible? Has anyone ever heard of that before?

Yes, up to 10% of people with MS have negative spinal taps.
http://www.webmd.com/multiple-sclero...sis-spinal-tap
http://www.nationalmssociety.org/abo...uid/index.aspx

[KatieDidNOT]

My Spinal Tap was clean as well...and I have had two. But my MRI different story...has MS demylinating lesions.

So definitely, you can have MS with a clean Spinal Tap.

Katie

[jessica_]

I know it's possible to have MS and have a negative Spinal Tap.

But has anyone ever heard of a doctor saying that you don't currently have MS but what you have could progress into MS?

My doctor didn't seem very concerned (I haven't seen him in about 2 years) but the last time I saw him, he wasn't too concerned. But he told me that what I have could become or progress into MS. I've never heard of such a thing but I'm kind of new to this so I wasn't sure.

As of result, I feel like there's something wrong with me for the last year or so I've become very forgetful and my coordination is off. I've never had that great hand eye coordination but it's also never been this bad. I'm also having a slower time processing things. I don't know if this is all connected or not but it's pretty scary for a 21 year old to handle. I'm mean I've been dealing with it since I was 16 but I need a break.

[Kraheera]

The spinal tap is a tool that makes it easier for a doc to declare MS... but here's the thing.

MS is not predictable. The ONLY solid 'symptom' I've seen reported about it is that the lesions TEND to look similar across the majority of MS cases. Tend being the operative word.

I've seen a few people on this board say that they were dx'd without a positive spinal. This could just mean that the O-bands haven't made it into the spine yet because the damage for that just isn't there yet.

I've got a few lesions on my brain and TWO on my spine... I also have the O-bands. My doc said my case was pretty easy to dx based on that. He also said that he's had patients with MS not show O-bands for 10-20 years after their dx.

MS attacks everyone in different ways. You can go decades without any major symptoms, and then BAM, out go the legs or something. That's the worst part of it, I think.

[KatieDidNOT]

But has anyone ever heard of a doctor saying that you don't currently have MS but what you have could progress into MS?

Yes. That is exactly what my first MS Specialist said. It was because at the time, I did not meet the diagnostic criteria for MS, but had demylinating lesions. That changed a few years later and I received a definitive diagnosis of MS.

My advice would be if you have not been to your neuro in two years and have been experiencing symptoms, you need to go back and be re-evaluated.

Katie

[kelm10]

research

google mcdonald criteria under the nmss website. There is criteria and that is what alot of neurologist go by.

You may need to find anther nuerologist. Also, is your neurologist a MS neurologist? The national MS society can give you a list. 1800 fight ms.

[jessica_]

google mcdonald criteria under the nmss website. There is criteria and that is what alot of neurologist go by.

You may need to find anther nuerologist. Also, is your neurologist a MS neurologist? The national MS society can give you a list. 1800 fight ms.

my neurologist is just a regular neurologist.

[artteacher]

I kinda am in the same boat as you. I have had neurological symptoms for years and have been tested for MS for the last 2.5 years. It was my uro-gyno who referred me to neurologist due to bladder testing showing a neurogenic bladder.
The neurologists had told me that yes something neurological is going on with my body but they are unable to diagnose exactly what it is because of the normal/neg test results.

When your neurologist 'basically told (you) me that at the moment I do not have MS but what I (you) have could progress into MS' he is basically saying the same thing. Right now my body is not showing enough criteria to diagnose me with MS but in the future it possibly could show more lesions in the correct places and/or o-bands in the lumbar puncture.

So right now it is still an open option that it is MS but has not developed enough of the signs/testing results to show that it is absolutely MS.

[FL_Jhawk]

Doctors are often very conservative in a diagnosis and even when they know you have MS, unless you meet all of the criteria that would hold up in a board of inquiry, they won't give you the diagnosis. They will let the disease progress until you meet the criteria. They are not evil for waiting. In a few cases, it turns out not to be MS and, had they given you the steroids and interfons, they could have needlessly harmed you, and those drugs aren't something to mess around with unless you are sure.

So, I don't really think that you "progress" into MS. It starts out mild, then it most always gets worse. How worse it gets before starting treatment is up to you and the doctor. I would personally want to start treatment sooner or, at the least, modify my diet to try to slow down the progression. Maybe even look into CCSVI, which would probably be more effective if done early and before there is any nerve damage.